I presented with what i thought was carpal tunnel in both wrists. They said its rare at my age (28) to get that and for it to develop suddenly at the same time in both. Ran some bloods and found b12 to be 150 and so i received the loading dose 3 x 1000mg per week for 2 weeks. I felt a bit better for about a week after loading dose and now i am starting to feel terrible again. I am very weak and exhausted, experiencing restless legs and as if my nervous system is frayed. I am off balance - i fell over yesterday. They originally prescribed injections every 3 months but because i presented with neurological symptoms and ive read the NICE guidelines i convinced them i need them every 8 weeks and they have obliged but i feel like i need them way more often than that even.
So it turns out my aunt has PA and highly suspicious my grandmother had it too (she passed away from sudden heart failure at age 40). Now they are running investigations into the cause of the b12 deficiency. I am vegetarian but i did show them a food diary and i do eat dairy, but this may not be enough for good levels of b12? It may be possible that being a vegetarian could be the only reason for the deficiency?
Finally had my blood tested yesterday for the IFABs - i am just hoping it is a straightforward conclusion because if the anti-bodies aren't found then its a long old mission to get to the bottom of this.
Not sure what i'm even looking for here, but i just need some reassurance. I hate waiting and im anxious the IFAB test will come back negative and i'll be battling to continue receiving the b12 injections. Even if it is dietry, why hasnt the loading dose just worked and i feel better. It does feel as tho i had it topped up and it just emptied back out - as would be the case for PA. I guess if that does happen i will end up just going rogue and self-injecting ? What a strange new chronic illness to encounter that barely anyone understands or seems to get how severe it feels.
Glad to have found this community, theres lots of very clued up people here so - i feel comforted by that!
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Written by
ozwald28
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Hi ozwald28 I hope the IFAB test is conclusive for you but sadly it can be wrong in 50% of cases.
Was your Folate level ever tested? If not it may be that you need to supplement with folic acid. Please check with your doctor about your iron levels too as all three work together to make red blood cells
I am not a medically trained person but if it is any consolation I have had P.A. for over fifty years and I'm still "clivealive" at the age of 81,
Thanks so much for the info about folate and iron i will deffo check this out. That has reminded me that i was told i needed a folate and iron levels test 8 weeks after last injection so that will be around October. In the mean time i will find a folate supplement. Super conveniently the drs wont let us book far in advance so have to remember both the bloods and the injections.
Certainly glad to hear youre still clivealive after all this haha.
Fresh green vegetables will provide folate naturally and some foods are now fortified with folic acid - look at the nutrition panels on the packaging.
If you are B12 deficient for other reasons than P.A (and there are many) and you are able to absorb it via the digestive system some breakfast foods (such as "All Bran") are fortified with B12 and B9 and of course there's also "Marmite" for B12 - Yum! In addition you can buy B12 in tablet form or spray from your local pharmacist or H&B.
Of course if you have P.A. none of the above will be much use.
There are others on here wo will be able to give you further advice.
Welcome to the forum! I'm sorry you're not feeling well. For reasons unknown, it seems that some of us just need frequent injections, even years on. Hopefully you won't have to go rogue, but be prepared to do so if needed, because it's the only way for those of us who need them to prevent a slow and painful decline. I guess you've already gathered that from your own readings!
Of course it can be dietary, but family history makes it all the more likely that it's PA... or a combination of both, where the dietary deficiency has made the PA apparent earlier.
Then again diet can have nothing to do with it. In my case, I'd been supplementing with high dose B12 tablets for years, and I still ended up with total numbness in my arms. I had no apparent family history at the time. I have had several IFAB tests and they've all been negative. My mother had two tests - one at age 65 that was negative, and another at 70 that came back positive, just a few months ago. So I guess I'll have to wait another 25 years to get a positive result LOL. I now suspect her mother had PA too, as she had dementia.
I have no clear answers for you, but plenty of sympathy. Keep reading and you'll find lots of useful posts from Sleepybunny (books to read, sites to visit), Wedgewood (how to order B12 for self-injection), and all the other wonderful people on this forum. You've come to the right place, regardless of what your lab values and doctors say
Thanks so much for your reply It is good to know theres a place for shared experiences like this as unfortunate as they are.
Sorry to hear about your mum's and your own difficulties with PA + the IFAB testing. Fingers crossed you are getting treatment before the 25 years rolls round lol?
I am really expecting the IFAB to come back as inconclusive cause that's just the way it goes isnt it. Though lucky the GP i did speak to seemed really pro-active about further advice from haematology and other possible tests to get to the bottom of this so fingers crossed!
Great to know the main people in the advice department too so thanks for that!
I'm getting treatment... self treatment! Started on my own (went rogue lol) 6 years ago and I still inject daily otherwise I decline rapidly. GP would't consider further testing because my b12 levels were high. Neurologist dismissed me. So I tested privately (everything was "normal") and then started on my own. I got my life back but it took quite a few years to recover, and I'm still improving.
Good for you for taking it into your own hands. It's almost like they find it audacious that we are well researched and know our own bodies! Glad you find it helpful to do it yourself. If you inject daily god how do they expect anyone to cope with just 3 monthly. 😬 I feel truly terrible after 2 weeks since last injection. I will play ball until all tests complete and then go from there. X
I am 4 months in as well. I'm in the United States and my doctor started me on one injection a week for 3 weeks and then once a month for the rest of my life. After the first month I was in so much pain and so disabled I could hardly get out of bed. I was literally crawling on my hands and knees until my friends brought me some crutches because my Walker didn't work, I could not put my feet on the ground they hurt so bad. I was out of breath I was completely exhausted heart palpitations weak muscles numbness in my feet and hands and up my legs confusion, depression, restless leg so bad, insomnia very bad. Etc.
After my first month of injections it just wasn't working fast enough for me so I took things into my own hands and I started buying my own B12 from Canada and I started injecting once a week because my doctor asked me to not do it daily. After a month of that it wasn't working for me so I started doing it twice a week then every other day and now I inject every day. My confusion has gotten much better my restless leg syndrome has gotten much better but it's still there a little bit. Lots of things have improved except for my balance is still off but not as bad and my feet still hurt pretty bad. I really can't walk more than a block and I don't dare do it without crutches or cane. I'm only about a month and a half in from injecting daily but I strongly feel that if I didn't do that I would not be getting better like this. I even skipped a day to check and make sure what would happen if I didn't inject everyday. The day I did not inject went okay but the following morning I was completely disoriented. I couldn't walk a straight line I was bumping into everything. I was confused and out of breath after just one day without it. So I went back to injecting every day and it took me 3 Days To recover from not injecting for one day. I'm glad your doctor is on board and is more open than most. You might ask if you could go twice a week and see if they are okay with injections twice a week.
And if that doesn't work then I suggest you may have to self inject. I am not a doctor I'm just learning about all this as well but this forum has taught me a lot. This is a wonderful place to come for support and help, somebody's always here. We're like a little B12 family.
About being a vegetarian... I was a vegetarian for 20 years but I was sick before that and I didn't know what was wrong with me, so I became a vegetarian thinking that I needed to eat a cleaner diet eat less carbohydrates eat less junk food eat closer to the source. The farther away from the source of food the worse it is for you so you could either eat steak or you could eat beef jerky. The steak will be better for you. But I do love beef jerky hahaha. Anyway you're vegetarianism may not be the only reason you have B12 deficiency. If it is you could take a supplement and be okay. But since your aunt and your grandmother were diagnosed, that would be a strong indicator that you have the genetic B12 deficiency. Which would lead to it being pernicious anemia and not just a diet B12 deficiency. Your symptoms are pretty indicative of that. You're vegetarianism may have brought it to the surface or may have made it more prominent. I don't care to eat animal meat but I do because my body needs it. Unfortunately we are meat eaters, which is hard for animal lovers like me. But it's either me or them. And not eating meat was killing me literally, so unfortunately I have to be a meat eater. Which actually doesn't do me any good because I can't absorb it anyway so maybe I can be a vegetarian now that I inject B12. LOL. I do seem to have better energy when I eat animal by-products. Although, I don't eat beef, Just Chicken, Turkey, and Some pork. Anyway, I would ask your doctor if you could go to twice a week just for a little while to see what that does. Maybe it'll show them that you do need it more often. And it sure would be helpful to educate more doctors on that. Good luck and keep us posted.
Thanks so much for your reply it was super helpful and insightful. Sorry to hear how much you have struggled with everything. Its so intense how bad you can feel both physically and mentally from this deficiency. I'm glad you've figured out a way to feel better even if that does mean daily injections. I think if we experiences such life altering symptoms then we should be allowed to get these injections through our doctors not just off our own backs but luckily the option is there. Many people deal with chronic ill health with daily injections of things - why not this.
I hope your recovery continues to steadily improve. I had quite a big day today i was out from 4pm - 11pm at a music event. I was so so anxious about it but they were very well equipped for disabled access and because i am also autistic - i got a pass for me to sit down in various places and that helped a lot. I was off balance a bit but i didn't fall over as that was my main concern.
About being vegetarian i just haven never really been able to eat meat from a texture point of view it nauseates me chewing it up is just vile. I could never eat meat as a kid and when i did eat it i couldnt think about what it was or i would spit it out hahah. I wish now that i could stomach it but my sensory difficulties are just not something i could over come. I was thinking earlier if i could get little capsule of raw meat where i didnt have to chew it just swallow it for the B12 i would have it. However, similarly to what you say if i do have PA then there'd be no point to that lol. I also love cheese a lot and im surprised to have this deficiency because i do eat a lot of dairy - milk , cheese + yoghurts every day. (not to mention dairy milk chocolate lol). But I'm not going to mess around with taking b12 supplements or change anything until all the tests are complete and we know what is going on fully, for fear of altering the results.
I will speak to my doctor about my worsening symptoms and see what they say. The numbness and tingling in my hands seems to have gone away now which is a very good sign! Though - feeling truly exhausted and rotton is not a favourable exchange!!!
That is great that you got out and enjoyed a concert. double great that they accommodated you so well.
I have some young friends whose two children have autism. We were looking into B12 deficiency because their diet is limited due to sensory issues. Also, they told me that the children being autistic, did not absorb nutrients as well. I wonder if that is your case? I do not know anything about this, but I did start a thread to ask some questions and some people answered. Also, There is some info out there on the web about B12 and autism. Particularly if the mother was a vegetarian and had no B12 to pass to her child through milk. So there is some literature about that. Maybe google that and see if you can find anything to show your doctor so he can increase your injections. Actually, these are links I sent my friends. Maybe they will be helpful. It is about children but maybe it started back then. Anyway, good luck!
Also, I totally get the texture and chewing on flesh. I never eat steak. It is too chewy. any meat that doesn't chew in a few seconds has to be spit out. I just can't do it. ground turkey breaks right down. I mostly eat that. A meat pill like violet ate in Charlie and the Chocolate Factory would be awesome. An entire meal in a pill!
symptoms of B12 deficiency. There is a section for children symptoms if you scroll down a bit.
Oh thats so helpful to know thanks so much for the links! I will check it out. it would be really interesting to know if there is a link between ASD + b12 deficiency, so maybe it's not PA after all. Who knows i am very impatient and just want to know my IFAB results though i may wish otherwise when it comes back negative! hahah Yes i will deffo push the doc for another injection i think just because of my unsteadiness and exhaustion which definitely improved and then declined. will also eat more green leafy veg as clive mentioned above for possible interactions with folate levels.
Hey sleepybunny thanks so much for all this info thats super helpful ! Am going to be very well informed when i next speak to my GP about this 😇 Being autistic is great because it means i devour information and keep it stored in my brain for later use haha 😇
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It is good to know theres a place for shared experiences like this as unfortunate as they are.
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